Wednesday, December 31, 2014

2014: A look back at what made this year special

   As I spend the last hour of 2014 with my family (I'm heading out to a friend's house for the New Year), I thinking of how much our family changed this year. We moved, Mac retired, Nixon started Kindergarten, I went back to work and Mac was the stay-at-home parent for a while. We also faced unknown behavioral issues with Nixon, taking on medical professionals and the school to get answers. The answers came and, for some, it'd be a tough pill to swallow for us it was a starting point. A challenge to tackle.

   This year was our year of change. While you never stop changing this year saw us change in HUGE ways. And through it all, we stayed strong. Mac and I faced the school boards together, a united front for Nixon. I dug in deep and sought answers. I faced the boards with information and a cool head. A task not always easy (especially when his teacher sat in a meeting rolling her eyes and dismissing me when she didn't like what I was saying).

   I was unwittingly given a new title. One of advocate. I'm not Nixon's advocate, to everyone. Not everyone will accept, see or understand that Nixon has Asperger's. Many people will see a child acting out, melting down and being disruptive. I see a child overwhelmed and unsure of how to process his overload. I have to explain to friends, family members, strangers who might ask and anyone else why Nixon is special. Why a trip home to Buffalo resulted in a giant-sized meltdown on Thanksgiving Day.

   But I'm not perfect. I have my bad days. I have days that I don't handle Nixon as well as I should. I have exhausted outbursts and annoyed exclamations. I have shitty moments where I wish he was just "normal". I have moments of weakness where I find myself envying friends whose children are riding bicycles without training wheels because Nixon can't even pedal a bike without using pedal straps. I have anxiety attacks when the school calls, wondering what Nixon did now and if anyone was hurt. I'm angry his teacher can't see beyond his actions. I'm hurt that Nixon is THAT kid in his classroom. But most of all, I wish I didn't have the guilt I feel every day thinking somehow I did this to him. I know this is not my fault, but life for him would be so much easier without these issues.

   So, next year I'm going to be more understanding. More tolerant. A bigger advocate, louder advocate. I'm going to embrace Nixon the way he is. Because he's a pretty fucking awesome kiddo! And he's my baby boy. (He said I can call him that forever!)

Mac's retirement ceremony

Nixon's preschool graduation ceremony
Nixon's first day of Kindergarten

Monday, December 15, 2014

The school's verdict is in.....

    What a struggle these past few weeks have been.
    Nixon and I took a trip home to Western New York for Thanksgiving, our flight was delayed 6 hours. We settled into a quiet(ish) corner of the terminal and waited. Nixon was pretty awesome just playing games, reading, asking to walk when he was tired of sitting and generally just chilling. We got on the plane a little before midnight and Nixon fell asleep 5 minutes later. He slept the entire flight!

   My family was privy to more than one Nixon meltdown. Those were my fault and in hindsight I wouldn't have pushed so much on him in such an unfamiliar setting. Especially not during the holidays. 

   All in all, it wasn't awful.

   But when it was time for Nixon to return back to school, after a week off, he struggled. A lot. First day back he spent almost 2 hours out of class. 
  By the end of the week, he was out of class only 20 minutes. 
  By the following week, 5 minutes one day and an hour another day. The hour day was a day the school had 2 assemblies. Nixon never does well on assembly days. Way too much stimulation. 

   Thursday, December 11th, I had a meeting with the IEP (individual education plan) board to get the results of the tests they'd done with Nixon. His teacher was there, in addition to the rest of the board plus a note taker. 
    After almost an hour of going over the testers findings, I finally heard the board's opinion and Nixon and his behaviors. They found he is on the Autism Spectrum, high-functioning more commonly known as Asperger's as well as ADHD. They are going to develop an IEP for him. I was asked if I'd be willing to come in and sit down with the Special Education teacher to weigh in with my thoughts and what I'd like to see the IEP provide for his education needs. The top of that list is: I'd like to see him in a smaller classroom setting for the morning instructional time. He has the most issues during those times and has said on more than one occasion that he prefers a quiet, empty classroom to do his work in. (He's been losing recess time recently and he actually likes doing his work without his classmates in the room.)

    His teacher is just....well, I'm going to just add the posts from my facebook status the day of the IEP results meeting:
   I survived. No tears, very little combativeness from me and lots of support from his administrators!

Nixon does have autism, he's high-functioning and would be classified as having Asperger's. He also has ADHD, which when added with the Asperger's makes for a very difficult approach to the IEP. 
BUT he does qualify for an IEP!
I've been asked to sit down with the Special Education teacher and help develop parts of his IEP. I'm truly, beyond words, grateful for the offer. 
One of the biggest results of this is: Nixon is super bright! He knows things but needs a different approach to learning new things. 

He dislikes writing. A lot! But, from what I was informed of today, this is not uncommon for people on the spectrum. The county has methods beyond pen and paper, that will be available to Nixon when his IEP is drawn up!

No one is writing him off! These adults in place to support Nixon when he's at school, see him as a loving and bright child! The diagnoses only change the approaches and methods to teaching him, not their views on him. With the exception of his teacher (who at one point during the meeting was rolling her eyes and looking at the ceiling!), no one ever thought he was just a "bad" child. Everyone wanted to help solve the puzzle that is Nixon, and we did! We have a label, with have a title, we have a starting point!

Yes, Nixon is autistic and has ADHD, but he is still Nixon! He's still a bright, loving, happy child and most of all: He's still my baby boy!
That being said, I nearly beat his teacher in the face! Not literally, but in my head I knocked her fucking teeth out of her face!
I brought up that, taking recess time away from Nixon was not effective. 
She countered that "he's still out there, he's still playing"
I replied, "Yes, but he's losing some time to do earlier work and he ENJOYS the quiet classroom setting when everyone else is outside."
She said "No, he's still out there, he's not losing time from recess."
I calmly, but firmly, responded (grabbing papers to support my next claim) "I have multiple minor incident reports and behavior sheets showing Nixon has lost time from recess to do work, in the classroom he was unable to complete earlier."
This bitch rolled her eyes!! Rolled her fucking eyes at me and says "OH, yeah well sometimes....." then trails off and doesn't even finish her sentence. 
I continue "I don't think it's effective as a tool because Nixon has told me he prefers a quieter classroom setting, without to "noise" of the other classmates when he's doing him required learning."

The special education teacher also added, when Nixon has been in her classroom to do work, he's much more focused and agreeable to do otherwise difficult tasks. 
I'm glad there were witnesses to the entire ordeal. 
Afterwards, bitch comes into my personal space to tell me how wonderful she thinks Nixon is. As if that's going to make me forget you just tried to shut me down in the meeting!

 I actually don't mind him loosing recess time. His hardest transition is from recess to learning again. So, Nixon being in there doing work actually helps him transition easier. 

It's not an effective tool, but he doesn't mind. He actually enjoys the pure quiet some days.
 BTW it's always so uncomfortable for me to hear from other people what a great parent I am for advocating for Nixon. 
I don't get why that's something to be acknowledged. Isn't every parent their child's advocate? Doesn't every child have a voice coming from their parents? 

I had the OT that did the sensory tests with Nixon, say to me as we were leaving the meeting "You are such a wonderful mom, for listening and speaking up for Nixon. He's really lucky to have you in his corner."

      January 7th is my next meeting with the IEP board. At that time the official IEP will be gone over and it will be implemented immediately.

      The diagnosis is only the beginning, but with it comes a starting point.
I spoke to a couple members of the board at the conclusion of our meeting. They said they wished more parents were so accepting of their child's test results and diagnosis as I was.  My response was "If my child was sick I'd more the heavens to get answers. If the answer was cancer, I'd treat the cancer. This diagnosis is no different. It's not changing who Nixon is, but it's giving us all something to "treat" to help him be successful in school."
The Vice Principal laughed and said "Nixon's got a strong support system in you alone, Mom."  I think they're starting to understand my sense of humor too. I left most of my anxiety behind when I left that meeting room that day. I know Nixon's going to struggle, but I also know I'm not alone the school wants to help me, help us, help Nixon.